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Thread: Extremely rare case of pancreatic cancer at a 12 years old girl :-(

  1. #1
    Newbie New User
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    Jul 2015

    Extremely rare case of pancreatic cancer at a 12 years old girl :-(


    We are facing an extremely rare case of Adenocarcinoma pancreatic biliary origin cancer at a 12 years old girl.

    We are desperately looking for knowledge, global experts with experience in this field with children, and for second opinion.

    Can you please help us connect with the such experts around the globe?

    Thank you!


  2. #2
    Gilad, So very sorry to hear this. You have come to the right place for information and support. My personal experience (my sister) is with MD Anderson, in Houston. In my opinion, they are cutting edge when it comes to diagnosis and treatment.

    Main thing is using a facility that treats a large number of people for Pancreatic Cancer and has the experience to make a difference. Sending positive thoughts your way for that precious daughter.
    8/29/14 Sister diagnosed with adenocarcinoma, pancreas body, 2B
    9/8/14 MD Anderson - Pancreatectomy w splenectomy
    12/23/14 Chemo round 2. Platelets 1.5 mil, White Cells 13,000
    1/14/2015 Diagnosed with Paraneoplastic Syndrome
    1/24/2015 Stopped all Chemo (Gem) due to potential kidney failure
    1/30/2015 Admitted to MDA with HUS and other life threatening issues caused by Gemcitabine
    2/20/15 She passed away peacefully from a brain hemmorage. I miss her so much.

  3. #3
    A friend of mine had a cousin who had PC as a 14 year old. That girl had the whipple and and now, a decade and a half later, is still alive, with a family. I can ask my friend if she has any details on that particular case.
    10.24.14 - 51yo Mom visits ER with abdominal pain. Found mass on pancreas & spots on liver. Liver biopsy performed
    10.29.14 - Official diagnosis of Stage IV Adenocarcinoma of the Pancreas with mets to the liver
    11.25.14 - Begin Gem/Abx
    01.26.15 - CT Scan, tumor 3.1CM. Grown since diagnosis but CA-19 falling.
    3.24.15 - CA19-9 is down to 4500
    5.11.15 - Liver mets shrunk by 20%, CA19-9 4300. Pancreatic tumor is stable.
    06.07.15 - Happy Birthday Mom! Made it to 52!
    07.06.15 - Tumor is stable, CA19-9 1000.
    10.19.15 - Tumor is stable, CA19-9 is under 700. Liver mets shrunk slightly.
    10.24.15 - Made it one year!
    01.21.16 - Single liver met doubled in size. Began Folfox.
    04.2016 - CT Scan showed slight shrinkage in liver met.
    06.07.16 - 53rd Birthday
    08.05.16 - CT showed progression. Existing mets grew, many more have emerged.
    9.02.16 - Extreme fatigue, admitted to hospital. Scans indicate lung nodules.
    9.17.16 - Mom passes just before midnight.

  4. #4
    Newbie Top User BobInBonita's Avatar
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    Mar 2014
    Hopefully the patients youthfulness and resilience will be a real asset in treatment.

    Pediatric pancreatic cancer is extremely rare (as you already know), so even experts will probably not have a lot of experience. I would look to major cancer centers, since they tend to treat more of the rare and unusual cancers. I really don't know if treatment for a 12 year old would be different than for an adult, with eventual surgery being the best hope for a cure.

    Here in the US, the best and largest cancer centers are those designated by the National Cancer Institute as Comprehensive Cancer Centers. MD anderson that was already mentioned is one on the their list. There is only one that I am aware of that is a pediatric cancer center. That is St Jude's Childrens Research Hospital in Memphis, TN. Here is a link to the NCI NCI Cancer Center Finder.

    Because of the complexities of pancreatic surgery, IF surgery is an option, I would choose the most experienced pancreatic surgeon over a more general pediatric surgeon.

    Best of luck to both you and the girl. Please let us know how your search goes, and what decisions are made. We hope and pray for a good outcome.
    Last edited by BobInBonita; 07-18-2015 at 08:10 PM.
    7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
    8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
    12/12 Whipple - R0 margins, 2/29 nodes pos.
    1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
    2/13 - 8/13 Gemzar for 6 months
    Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
    3/15 - spot larger - probable met - surgery planned
    4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
    5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
    10/15 - 8/16 maintenance 5-fu every other week
    8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
    9/16 - lung biopsy confirms pan can met,
    10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
    4/17 - PET/CT showed significant disease progression, multiple lung mets, pancreatic bed tumor has grown
    5/17 - Started hospice care - striving for acceptance

    Stay busy and live life to the best of your ability.

  5. #5
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    Poster's IP is Israel. posting this in case someone has information in that area of the world too.
    Last edited by Didee; 07-19-2015 at 03:05 AM.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  6. #6
    Experienced User
    Join Date
    Feb 2015
    If you search PubMed, you should hit on recent research articles from various teams. Not all of the articles will be open access. However you will be able to get to the abstracts of all of the articles, and you can click on "Author information" to find where the lead author is located. Almost always this will be at a top medical research institution.

    So sorry to learn that your family is facing this challenge. Wishing you all the best.

    Here is a sample search with PubMed: http://www.ncbi.nlm.nih.gov/pubmed/?...reatic+biliary
    Intermediate Risk Endometriod Cancer: Stage 1a Grade 2 some lymphvascular space invasion, DaVinci surgery December 2014, Brachytherapy February 2015

  7. #7
    Super Moderator Top User ddessert's Avatar
    Join Date
    Oct 2013
    Blog Entries
    Gilad, is this cancer cholangiocarcinoma that is located within the pancreas?
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919

  8. #8
    Quote Originally Posted by Didee View Post
    Poster's IP is Israel. posting this in case someone has information in that area of the world too.
    My husband had genetic testing done for the breast cancer genes in order to determine if his chemo could be tailored to it. Here is a link to a famous individual went through this process and her chemo was tailor using this same process. I do not know if this child is Jewish, but it is my understanding that the woman in this article is. Whether or not that would be a factor - i don't know. I wish I had more to give.


    My heart is with this family.

    July 22 2011 Hubby (64) Diagnosed PanCan. Sept2011- Feb 2012: Abraxane/Gemcitabine. Feb-May 2012:Gemcitabine only. June-Sept 2012 5FU. Sept 4-no more chemo - Just living life. Multiple stents. Jan 2013/18 month mark. Mets everywhere. Looking for a bumper sticker that says 'Stay at safe distance - Driver suffering caregiver burnout'. Hospice Thurs Feb 28 2013. March 12 2013 he went off to his new adventure where we will one day meet again. It was 20 months from date of diagnosis until now.

  9. #9
    Newbie New User
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    Aug 2015
    You can search this on internet.

  10. #10
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Gilad, I have moved your thread to the pancreatic cancer forum, inasmuch as there is far more expertise there, and the pancreatic adenocarcinoma is an adult disease in a child, and not specifically a childhood cancer. Has a biopsy been performed and a pathology report definitely identified it as adenocarcinoma?

    Having said that, I would look to Germany or perhaps France, as there is substantial anti-cancer research being done in both countries. In the United States, if that is an option, the members here can advise you of their knowledge and opinions on treatment centers.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.


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